t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.

10.31.2010

Now that I have few moments here and there (Berkeley is still sleeping like a dream on her new schedule), I thought I would try to put down some of my religious musings again. The danger behind this is that I expose my ever changing, or maybe evolving, ideas. I think I believe as Socrates said,

"As for me, all I know is that I know nothing." Republic

It just seems that way sometimes. The more I read and study and learn, the more I realize I really just don't know anything. I feel so inconstant. A precarious personality attribute. It makes me feel I am balancing on a fine line of being faithful to new truth, and being blown about by every whim. Which leads me to my second Socratic thought for the day,

"The unexamined life is not worth living." Apology

I can't say I wholly agree with this, because I do feel life is precious gift from God worth living, no matter the costs. But I think I understand what he was saying. I was listening to an interview this last week and the interviewee altered this quote slightly to mean,

The unexamined religion is not worth following.

This struck a chord somewhere inside me, because a deep examining is precisely where Brent and I find ourselves. I can only speak for myself because while our faith intricately connects us, it is very individual as well.

A note on authoritarianism....

I think it is important to note, looking back, this journey began as I found myself questioning the authoritarian model of understanding I have always leaned so heavily upon since youth. As I became disillusioned politically, my faith in mainstream anything started to fail me. The newspaper, television, books, the internet. But a conundrum arises. I cannot discover everything experientially or first hand. Therefore, there must be a place for authoritarianism in defining my personal ethos. I have to trust in the expertise of others in some circumstances. The question becomes, which authority do I trust? This dilemma arises in questions of nutrition, economics, politics, religion... basically anything that is important to me.

This post starts a series of posts pertaining to my examination of my religion.

I begin with a caveat: Somethings I do know experientially.

I know I have had the experience the scriptures describe as being "born again," or "becoming a new creature in Christ." I was 15 years old. I will never forget the circumstances, the overwhelming emotions, the understanding welling in my mind, the connection with the Savior. It was a grounding experience. Powerful enough to carry me through whatever trials of faith come.

Immediately following this came a similar experience regarding the Book of Mormon. Whatever questions I may run into about its origins or historicity, I know it is the word of God as revealed to Joseph Smith.

What these two experiences solidify in my mind is the reality of personal revelation. I think this is where the crux of my belief must lie. As my authoritarian view of life has crumbled and led to close examination of so many things, it has opened my mind quite a bit. Now my attempt is to seek for truth. Not truth as someone has already explained it to me. It is daunting, and even exhausting, but crucial. I feel I have a jump start, because some things I already know.

I also know a life of faith and devotion to the Savior, family, and the LDS church are for me. It is what I want for myself and my children. This search doesn't feel like an issue of losing or shaking my foundational faith. But instead, a reexamination of the origins of my religion, who and what I place my faith in, and what the doctrines of my religion truly are.

Here are some of the things I am working through, in no particular order of relevance...

the nature of God,

grace versus works,

the atonement,

polygamy,

prophets and apostles,

doctrine versus culture,

blacks and the priesthood,

women and the priesthood,

homosexuality,

authority,

changes in the Book of Mormon,

evolution...

It is both invigorating and challenging. I think that non-comprehensive list is enough to last me for quite some time.

10.29.2010

In an effort to reduce the junk fest of Halloween, this year I am bringing these Cyclops Twice Baked Potatoes to the annual family party. Simple, simple, simple.

I baked my potatoes at 350 degrees for an hour. Scooped them out. The insides I mixed with 1 cup of keifer and a little garlic and salt. Refilled and grated a small amount of raw cheddar cheese on top. The eyeballs are olives and the veins are red pepper slices. I also dashed on paprika. Bake again at 425 degrees until golden.

I also thought sun dried tomatoes would work well and smaller potatoes like yukon golds or little red potatoes.

10.28.2010

Twenty-four years old and going blind. Not exactly what anybody expects to hear. Last week, Brent's friend and work colleague found out he has a degenerative eye disease, which has almost blinded his left eye, and is aggressively attacking the other. Brent began talking about this talented kid they brought on board around a year ago. With intense talent, vision and heart, he has been the impetus in bringing a new brand to market. However, all this is done with his eyes. First and foremost Nick is an artist.

I can only try to imagine the devastation. He needs immediate surgery to preserve his right eye. The surgery is not FDA approved (thus his good health insurance is useless) and only a couple places in the US perform it. This is Nick's only chance to prevent complete blindness. A $20,000 price tag is daunting, and enough for all of us to try and do what we can to help Nick and his wife surmount this mountain.

A few days ago, a campaign began in full force to Save Nick's Eyes. You can purchase a t-shirt, or just donate if you want. From all the generous souls out there, $7,000 dollars has been raised. It cuts a dent, but they need more. Nick, did a little info video where you can hear his story and all about the disease. (It is a heartfelt 7 minutes.) Click on the link below to watch and donate.

10.26.2010

I have some cute videos of the girls saying these poems but they wouldn't upload properly. I'll see if I can't them to do them again tomorrow.

SOMEONE

by Walter del la Mare

Someone came knocking

At my wee, small door,

Someone came knocking,

I’m sure--sure--sure;

I listened, I opened,

I looked to left and right,

But nought there was a-stirring

In the still dark night.

Only the busy beetle

Tap-tapping in the wall,

Only from the forest

The screech-owls’s call,

Only the cricket whistling

While the dew drops fall,

So I know not who came knocking,

At all, at all, at all.

This poem is really fun, we just memorized the first stanza.

THE WITCH OF WILLOWBY WOODRowena Bennett

There once was a witch of Willowby Wood,and a weird wild witch was she, with hair that was snarledand hands that were gnarled, and a kickety, rickety knee.She could jump, they say, to the moon and back,but this I never did see.

Now Willowby Wood was near Sassafras Swamp,where there's never a road or a rut.And there by the singing witch-hazel bushthe old woman builded her hut.She builded with neither a hammer or shovel.She kneaded, she rolled out, she baked her brown hovel.

For all witches' houses, I've oft heard it said,are made of stick candy and fresh gingerbread.But the shingles that shingled this old witch's roofwere lollipop shingles and hurricane-proof,too hard to be pelted and melted by rain.(Why this is important, I soon will explain.)

One day there came running to Sassafras Swampa dark little shadowy mouse.He was noted for being a scoundrel and scamp.And he gnawed at the old woman's housewhere the doorpost was weak and the doorpost was worn.And when the witch scolded, he laughed to her scorn.

And when the witch chased him, he felt quite delighted.She never could catch him for she was nearsighted.And so, though she quibbled,he gnawed and he nibbled.The witch said, "I won't have my house take a tumble.I'll search in my magical book for a spell.I can weave and a charm I can mumbleto get you away from this nook.It will be a good warning to other bad mice,who won't earn their bread but go stealing a slice."

"Your charms cannot hurt," said the mouse, looking pert.Well, she looked in her book and she waved her right arm,and she said the most magical things.Till the mouse, feeling strange, looked about in alarm,and he found he was growing some wings.

He flapped and he fluttered the longer she muttered."And now, my fine fellow, you'd best be aloof,"said the witch as he floundered around."You can't stay on earth and you can't gnaw my roof.It's lollipop hard and it's hurricane-proof.So you'd better take off from the ground.If you are wise, stay in the skies."

Then in went the woman of Willowby Wood,in to her hearthstone and cat.There she put her old volume up high on the shelf,and framed her hot face with her hat.Then she said, "That is that!I have just made a bat!"

10.25.2010

10.24.2010

Independent reading has not come early or easy to Ellery. Read aloud is an entirely different story. She begs for, The Chronicles of Narnia, The Little House series, Old Mother West Winds, Chinese or Egyptian Myths, you name it and she is passionate about hearing it. In fact, we even have some tantrums if we don't read for a sufficient length of time (which can be hours).

I often let slip in conversation with Ellery, little tidbits about my voracious reading appetite, from the time I was a tiny girl. My hidden flashlight, prying my eyelids open to finish just a "few more pages," you readers know what I am talking about. I still am guilty of it. As the ever sagacious Frog would say, "We must have will power Toad." With a 5:30 am alarm looming nearer, I still often can't close my book. By giving her little ideas about how exciting reading can be, I've hoped to get her hooked on independent reading. Sometimes as she begs and begs for one more chapter, I mention offhandedly she could always read it herself...

Tonight my heart warmed when I came upon this scene. Hopefully the trend continues.

She is reading a book on the Titanic. I think they just hit the iceberg.

10.20.2010

When I wrote that post a few nights ago, I couldn't figure out why Berkeley seemed to be getting more and more fussy. Then it dawned on me. She should be on a schedule by now. More sleep is the key. (Why had I not thought of this before? I am supposed to be a seasoned mother by now.) Monday morning I pulled out my trusty "Healthy Sleep Habits Happy Child," (aka: my sleep bible) and reacquainted myself with the proper sleep schedule. Wah lah!! Another miracle sleeper.

Berkeley was in bed by 8:30 Monday night, 7:30 last night and 6:30 tonight. She has cried about 20 minutes total. I think tomorrow we should be at our double nap, 6 pm lights out, for good.

My mom is always flabbergasted by the 4 month to 2 year old stage of my children's lives. She is convinced all they do is sleep. In fact, she finds it rather odd. I find it fantastic. The children are so happy. I am a slave to the schedule but my children thrive on it.

In fact, today I was having Berkeley withdrawal. I am so used to having her with us every moment, in the sling, swing, bouncer etc. But she had clearly become overtired. She wasn't sleeping as much in her swing or the sling. The interaction, entertainment and stimulus level were too much.

Now she is snug as a bug in her bassinet and I have regained 2 hours at night. Hurrah. It's like I might become human again. Don't ask what I was before... I think this will be a good change for the whole family. I need some extra decompression time these days.

10.18.2010

10.17.2010

Sorry to say it little miss Berkeley, but sometimes I just think "Take me back to the Emmett days!" You can wail up a storm. In fact you are coming dangerously close to "Callista levels" on the crying. At least you sleep moderately well, which your big sister never did.

Brent is convinced you are one chubby, bundle of trouble.

At 11 pm and 5 am when you are wailing and seem to be inconsolable, if I happen to unswaddle you, stand up and bounce you around you flash me a gorgeous smile and then start wailing again. I wonder if I really just saw that. I did.

And I have to concede.

Berkeley you are one chubby, bundle of trouble!

It's 10:59 and you just finally fell asleep in your swing. Do I dare to try and make the transfer upstairs. It rarely works. If I fail, I am in for another hour of crying. Decisions, decisions ;)

10.16.2010

After a great deal of turmoil, we decided to go ahead with Berkeley's ear tube surgery and bronchoscopy yesterday. Things went well. As anticipated both ears were bursting with thick fluid. The poor lamb was very startled by noises yesterday in the hours after the surgery. When it was time to begin the bronch, the pulmonologist found the scope was too large for her little lungs. Instead they flushed her trachea to collect the secretions, a far less invasive procedure. I was grateful the full bronch wasn't done. Berkeley was in her best stretch ever, 8 days without oxygen. A full bronchoscopy would have really set her back. Thankfully she did not have to be admitted and came home within 5 hours of the procedures.

By the picture below, you can clearly see she didn't know what was about to hit her as we sat in the hospital. In fact, her pulmonologist said she was flashing smiles at everyone up until the moment she went under anesthesia.

Today she is recovering. Her oxygen needs have increased but they will hopefully rapidly decrease again. There is finally consensus among the doctors about the PCD. People tell me I should feel vindicated. But really there is no glory in finding out 3 of your 4 children have a lifelong illness of which there is no cure. Honestly, I am not sure how to feel. It is very difficult for me not to be angry with the physicians of the past 7 years. I am thankful we will begin treatments for the children. This will hopefully prevent lung damage in the two younger children and slow the progression of the disease in all three. The idea, like cystic fibrosis, is to keep their airways clear of fluid. To do this, Ellery and Emmett will begin wearing a percussion vest 2x a day, and I will continue manually "pounding" Berkeley. I think the girls will up their gymnastics to 3x a week and Ellery is beginning the flute.

The last seven months of my life have been the most challenging I have yet faced. It is so difficult, as my mom and dad would say, to "not climb the inference ladder." I wonder about what it will be like when my daughters and son are my age, trying to raise their families. In one of my weaker moments I expressed to Brent I didn't feel I was really "enduring to the end" very well. My heart feels so heavy sometimes. He reminded me that Christ during his ministry didn't run around ultra cheerful. He often wept. As I do. He often pleaded for his friends just to be near and listen. As I do. He even pled with his father to take the pain away. As I do. If he who is perfect was allowed to grieve and plead for relief, maybe it is okay I do.

10.06.2010

Berkeley's ears are still full of fluid. We are debating whether to insert tubes. Tubes have been a blessing and a curse to Ellery. Currently the surgery is scheduled a week from Friday. The pulmonologist wants to do a Bronchoscopy at the same time. This would require an overnight stay because Berkeley still has oxygen requirements during sleep.

Brent and I go back and forth if this is the right thing to do, we just wonder if we might have enough information from the upcoming bronch on Ellery, that it would be unnecessary on the baby. But then again, Ellery was on oxygen for 3 weeks, Berkeley is 4 months old now. So many questions.

To be honest, I don't sleep very well. Last night Berkeley set her alarm off every time the cannula came out of her nose. It hasn't been that bad for a while. What is difficult is how erratic this seems to be. 2 weeks ago she went 3 nights in a row on room air, then she took a big jump backwards. It is hard to know what to think.

10.05.2010

Our family journal has suffered a bit of neglect as a direct result of countless doctors appointments (and the resulting stresses and research), a delightful but classic, night-time fussy baby, and home educating my children.

Both my own sweet mother and Brent's Mom were willing to drop everything to come with me to attend a medical conference on a rare disease I have been investigating for over 2 years. A disease I feel three of my children have inherited. It turned out my mother in law attended the conference with me in person and my mom provided additional moral support in the evening phone calls.

It was an invaluable 3 days of learning, questioning and networking. I literally had the top researchers, geneticists, and pediatric pulmonologists in the world surrounding me. I listened and tried to absorb like a sponge all the information I could. But more importantly I bombarded them with questions. Brent's mother was amazing. She took the baby the moment she fussed. They walked and played and Berkeley slept. It was probably the best 5 days of Berkeleys life, she got so many kisses and so much attention. She flashed those blue eyes and stopped people dead in their tracks.

I snagged the above picture from a website. I was hiding in the back, one of only a handful of parents or patients amongst the attendees.

I then was able to meet other parents, children and adults with PCD. It was fascinating to hear their stories. I was moved to tears the first time I was in a room with other children who sounded EXACTLY like mine. I found myself overwhelmed by how lucky my children are. They do not suffer from any of the debilitating complementary conditions or constant exacerbations as many other children.

I hoped to come away from this conference with my questions answered. A certainty of their diagnosis and the direction to proceed. I cannot say those things happened.

Here is what I did learn....

I learned this is a disease we are still just beginning to try to understand. There are no proven treatments, or even clinical standards of care. Diagnosis is a nightmare. Multiple genes, express varying phenotypes and severity. They have yet to find a foolproof diagnostic tool.

It is clear to me my children have an inherited condition affecting their mucocilliary clearance. From talking to the doctors, all other known possibilities can be ruled out from previous testing done on the children, possibilities that were a less probable fit. I do not know if they will have an official diagnosis of PCD, as the genetic tests only catch about 30% of known cases and other methods of diagnosis are just as imprecise.

Lacking an official diagnosis will make this journey longer, and more difficult. But the treatment and consequences take us down the same path irregardless of the label.

One afternoon Mimi and I enjoyed the lovely sights of St Louis. The weather was phenomenal and the people were genuinely kind. The arch was huge!

The long term consequences of this are uncertain. I am confident the children will have happy long lives with proper attention and care to their lungs. We should have more information available over the next couple months as more in-depth testing is done on all three children. My hope is that their condition is so mild, any intrusive therapy will be minimal. I think this should be the case. But the data at the conference was filled with questions. The danger of this is that children can look and act quite healthy, while a great deal of bacteria and inflammation fill their lungs, causing collapse and permanent damage called bronchiectasis. Thankfully we have 5x as much lung tissue as we need, so we have some "breathing room" per say. If we can slow the damage now, we are making significant strides to improve long-term quality of life.

I have backed off discussing my children's specific health concerns on the blog, but it is our life. I can't pretend this isn't happening if this is going to be our family history. In fact, as the details begin to become more clear, I think I may become an advocate to help doctors recognize similar children to mine, so their lungs can be protected.

I don't write this looking for sympathy. I write this to chronicle a journey that began 7 years ago. I knew I couldn't ignore the wet, productive cough that started at birth and hasn't ever disappeared for more than an hour or two for 3 of my children's lives.

I wish I had the words to describe the frustrations I have bumped up against in every direction with my children's doctors. We finally seem to be finding some pulmonologists and immunologists who are concerned and alert pertaining to our kids. I wish they were knowledgeable on this rare condition as well. It looks like we may have to receive the majority of our care in Denver. It is yet to be determined.

In summary, I am exhausted, hopeful but extremely apprehensive. I am grateful. There are so many things I am so glad this isn't. So many complications I am comforted we will not face.

10.04.2010

We had a great tour of the Mrs. Fields World Headquarters today. I wish I could have snapped a picture of all of us in our hair nets (including the two baldies, Berkeley and Emmett) but unfortunately it was not allowed.

It was interesting. Ellery was almost overcome by the sweet smell of melting sugar, butter and chocolate. (She is my sweet lover!) The girls we also amazed to learn the dough is frozen for up to 6 months and the cookies for up to a year. They are beginning now to make their christmas cookies. I was most fascinated by the cyclical nature of their business. 9 months of the year they employ 27 people, from October to December 270+. Talk about about cash flow issues. No wonder they filed for bankruptcy 4 years ago. They are coming out now.

The children had a great time. I am grateful to the local homeschooling chapter for the great field trips they organize in our behalf.